1 January 2018 Advocacy Strategy 2015-2019 Advocacy is one of five Strategic Priorities in MS Ireland’s Strategic Plan 2015-2019. This document outlines MS Ireland’s advocacy priorities for the lifetime of the current Strategic Plan. In addition this document outlines the activities that will be undertaken to achieve these priorities. Contents 1. Introduction 2. Advocacy priorities 3. Key partnerships and collaborations 4. Advocacy actions for 2018 5. Reporting 6. Contacts 7. Further reading 1. Introduction Multiple Sclerosis Ireland (MS Ireland) is the only national organisation informing, supporting and representing the MS community. Our concern is the adequate provision of services, resources and entitlements for people and families living with Multiple Sclerosis (MS). Where services, resources and entitlements are unavailable or inaccessible, MS Ireland aims to highlight the deficiency and take action to solve the issue. The Board, Chief Executive and MS Ireland staff team represent the MS community on collective issues at a national and international level. These are the issues which affect the entire MS community irrespective of individual circumstance or geography.
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1
January 2018
Advocacy Strategy
2015-2019
Advocacy is one of five Strategic Priorities in MS Ireland’s Strategic Plan 2015-2019. This document
outlines MS Ireland’s advocacy priorities for the lifetime of the current Strategic Plan. In addition this
document outlines the activities that will be undertaken to achieve these priorities.
Contents
1. Introduction
2. Advocacy priorities
3. Key partnerships and collaborations
4. Advocacy actions for 2018
5. Reporting
6. Contacts
7. Further reading
1. Introduction
Multiple Sclerosis Ireland (MS Ireland) is the only national organisation informing, supporting and
representing the MS community. Our concern is the adequate provision of services, resources and
entitlements for people and families living with Multiple Sclerosis (MS). Where services, resources
and entitlements are unavailable or inaccessible, MS Ireland aims to highlight the deficiency and
take action to solve the issue.
The Board, Chief Executive and MS Ireland staff team represent the MS community on collective
issues at a national and international level. These are the issues which affect the entire MS
community irrespective of individual circumstance or geography.
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January 2018
MS Ireland believes it is crucial that a collective voice for people affected by MS is heard in response
to national policy decisions in order to ensure the interests of the MS community remain
represented.
MS Ireland’s Strategic Plan for 2015-2019 sets out the following aims and objectives regarding
advocacy:
Specific aims:
To optimise relationships and understandings between relevant umbrella group
MSI will be established as ‘the’ voice of MS in Ireland
To increase awareness and understanding of the circumstances and needs of people with
MS across civil society and government
Objectives:
To liaise and work with umbrella organisations (nationally and internationally) to create a
more cohesive and united voice
Strengthen current advocacy alliances and develop new links to harness the strength of
shared visions
Utilise data sets and service delivery experiences available to MS Ireland to inform our
advocacy agenda
People with MS will have access to effective treatments for their condition, including
treatments which can slow, stop or reverse the accumulation of the disability
To raise MS Ireland’s profile as a leading voice and resource for people with MS
2. Advocacy priorities
The following advocacy priority areas have been established using a variety of methods including:
Informal discussions with people with MS and their families/carers
Informal discussions with service providers and healthcare professionals, including MS
Ireland’s Regional Community Workers
Results of 2016 ‘My MS My Needs’ survey, completed by 773 people with MS, published in
September 2017
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January 2018
Consultation exercise conducted in December 2015 – draft Advocacy Statement circulated to
MS Ireland’s members via email and displayed on MS Ireland website, with request for
feedback
MS Ireland will commit to regularly reviewing the organisation’s advocacy priorities. Methods by
which this will be done include:
Completing the ‘My MS My Needs’ survey periodically, subject to funding
Effective utilisation of data from MS Ireland’s Salesforce database, to identify the key issues
with which people affected by MS present to MS Ireland for support, and assess where gaps
and deficiencies exist in service provision nationally
It should also be noted that these priorities will remain flexible and that MS Ireland will remain
responsive and reactive to other issues of importance to the MS community, as they arise.
The numbering of the priorities does not indicate their order of importance.
Priority 1 - Implementation of the 2011-2015 National Neurorehabilitation Strategy
Neurorehabilitation services are essential for helping people with MS recover from relapses and to
slow disease progression. The 2011-2015 National Neurorehabilitation Strategy clearly laid out the
need for neurorehabilitation services in Ireland and a plan for delivering them. However, since the
publication of the strategy, no tangible progress has been made to deliver on this. Irish
neurorehabilitation services are under-developed and under-resourced. Data from the Neurological
Alliance of Ireland (NAI) indicates that:
Ireland should have 270 inpatient beds for our population, there are less than half that and
none outside Dublin
There should be four regional inpatient specialist rehabilitation services nationwide, we have
none
There should be at a minimum nine community neurorehabilitation teams nationwide, one
in each Community Health Organisation as a starting point. There are only three such teams
in the entire country and they are only partially staffed
We have the lowest number of consultants in rehabilitation medicine anywhere in Europe1
Data from the My MS My Needs study (2017) showed that:
Less than 25% of respondents had ever been offered neurorehabilitation